Monday, April 28, 2014

Today is Marvel Monday at Brenna and Sam's school. Sam had no desire to dress up, but Brenna did. She decided to be Cat Woman, a super villain. While dropping off the kids, I scanned the crowd, trying to see how many kids had chosen to come in costume. I saw a few superhero t-shirts, but no other cat women entering the building. The good news is, we probably aren't duplicating anyone's costume today. The bad news is, Brenna started her period this morning.

I knew this was coming. It shouldn't come as a shock, but there was something that twisted my gut into knots to know that she had reached this milestone on a day that she was happily eating her Honey Bunches of Oats, wearing her sequin cat ears with a tuft of black "cat hair" glued to the headband.

It doesn't feel fair. And shouldn't I really be past that point of reasoning by now? Every parent of every child walking the planet knows that life is not fair. Every special needs parent experiences the unfairness on a fairly regular basis. And yet, I wish that I could wave a magic wand and never have her enter physical adolescence. It opens up doors in my mind that lead to places I'm just not ready to go yet. Brenna will always have a vulnerability because of her disability. The start of her period reminds me that adulthood awaits and the path continues on, despite my lack of readiness.

Different points of my parenting journey have had different levels of dependence upon God. I think we're approaching a time of serious spiritual growth for mom, starting now. And that isn't a bad thing. It's a good reminder that if life were fair, there would be no room for forgiveness, no room for salvation. So, I'll take unfair, at least for today.

Wednesday, April 2, 2014

While cleaning out a closet last week, I found a creased and stapled packet of papers with "Brenna Kaurin" printed on the first page: it was her IEP from 2007. Some of the goals included trying to help her mimic speech by repeating what others said, using pictures to indicate wants and reduce tantrums, to learn turn taking, find ways to help her refrain from running away and use a tissue when appropriate.

She has come a long way. And yet, we still have further to go. This week her Dad and I made our decision official and shared with her teacher that we wanted to enroll her in Armstrong School next fall. This decision has been nothing short of excruciating.

I toured the facility back in February and mentally prepared myself to have an open mind and see it through an unbiased viewpoint. But when I walked into the room of older students, preparing for job interviews and honing work skills, panic coiled in my belly. It wasn't the setting, but rather it was the reminder of what we are working towards: someday Brenna will be an adult and will need to have supportive people and an engaging activity, like a job, to feel fulfilled.

Coming home, my mind raced. She could be content at the Middle School. It would feel so normal to just drop her off there each morning and pick her up at the conclusion of her school day. It would feel very typical to progress to the same school as all of her classmates, with no major differences, aside from hair twisting, redirected conversations, adapted curriculum and an IEP with LBS1 instruction.

However, for me to continue in my pursuit of the typical for typical's sake would be a disservice to her at this point. Greg and I realize she needs a chance to start working on life skills in a setting where she isn't behind everyone else, but neck and neck with them.

It's hard to engage in full inclusion from kindergarten to 6th grade, only to find we are now at a point where those familiar peers will keep moving to the right, while our path diverges and we shift left towards a new school with new friends. And though this choice is ours, it is not an easy one. I know that at this point, it is likely that her other peers with special needs will continue on to the Middle School, where their families feel they will best learn and grow at this point. I completely respect their decision.

Today is Autism Awareness Day. Perhaps what I have become most aware of in my parenting journey is that everyone has different needs. There isn't a "one size fits all" educational approach or life approach. Truly, it is a moment by moment, trusting your gut, white knuckled grip of a ride.

Wear blue today, but don't forget the compassion and patience to go with it. And after the shirt has hit the hamper tonight, keep the open mind.